Self-Diagnosed Autistics Are Valid
Self-diagnosis is often a taboo thing in the medical field. We are encouraged to shy away from diagnosing ourselves off of quick internet searches and checklists. But what happens when getting a proper diagnosis is not possible?
Eight years ago, I was talking to someone who is close to me about the way I think and some of the problems I have with my social interactions. She responded that she thought I was autistic. This was a life-defining moment. I took her comment seriously, as she works with adults with disabilities for many years. So, I started doing a lot of research myself. Eight years ago, there wasn’t a lot of research on women with autism, especially with adults. There were a few leading people who were speaking out about the differences in autism in girls and boys in the U.K., but the United States research was far behind.
I remember the first time I brought the possibility that I could be autistic to my primary care doctor. I had done almost a year of research at that point and I made a checklist of all the things I thought might be reasons why I could be autistic. I remember vividly holding my phone with a list that I had typed out, because I have trouble speaking at my doctors’ appointments. My doctor just kind of shrugged and said that he had never known anyone who was autistic that made lists like that and I didn’t look like his other autistic patient who was a boy.
I was really upset about this. Why didn’t the doctor know all the things I had learned about autism? Why didn’t he understand that not all autistics are the same? I wasn’t going to be the same as his 12-year-old autistic boy patient. It became clear to me how behind the medical field was with diagnosing women with autism. I wondered how many adults had slipped through the system and were feeling like I was and had been struggling their whole lives.
For six years, I continued to learn more about autism and more research came in about women and adults on the autism spectrum. During this time, I considered myself a self-diagnosed autistic. Many self-diagnosed autistics have trouble being able to get a diagnosis. This is mostly due to the high costs of the assessment. For most adults without insurance, an adult autism assessment can cost upwards of $6,000 in the United States.
This also doesn’t guarantee that the assessment will be accurate, as there is still very little research on women with autism. Most women mask their autism traits. The DSM-5 criteria for autism is still based under a male lens of autism meaning that there aren’t specified areas of consideration of the differences between males and females, such as masking and mimicking. Women aren’t the only ones that are left behind in being undiagnosed. Many go undiagnosed due to age, income, ethnicity, and other comorbidities that mask their autism.
Last year, at 31 years old, I was finally diagnosed with autism spectrum disorder. Not everyone’s diagnosis process or story is the same. It is a privilege to access a diagnosis, which is why it’s so important to accept those who are self-diagnosed into the autistic community. Although for some it is a dream to eventually be diagnosed, some are happy just understanding themselves through research. To all self-diagnosed autistics out there, I see you. I know your struggle. You are valid.
Getty image by Victor Tongdee.